Thursday, July 29, 2010


Lauren is crawling...OMG! We went to for her OT session on Tuesday, and the therapist said she thought Lauren would be crawling soon. I was in disbelief, and told her I didn't think she was there yet, and probably would give her 6 weeks. The OT said she thought it would happen over the next few days...we were both like "yeah right". And sure enough, that night, Steve came up to me and told me Lauren crawled. I asked if he was kidding, he answered no. I asked how far? Usually she'll just do 2 steps and then collapse. He told me about 5-6 feet. And sure enough, Lauren is now crawling. Motivated to crawl only by food, but hey she is crawling!! Just a week shy of her first birthday and she is finally mobile!!

Lauren's crawling is significant to us on many levels. First, it shows that with early intervention therapy, commitment in practicing the exercises, and with ALOT of PATIENCE and love, she will get there. Was it the therapy, or would she have gotten here anyways? I believe the physio helped tremendously and can be attributed to her success in crawling. Secondly, the reason why I'm always freaking out about things is the stupid genetics literature we received said that their study of babies did not achieve crawling until at least 18 months and that it ranged from 18 months - 3 years (with some babies never crawling). I know ppl always say the literature is worse case scenario, but if you think about it, its somebody's worse case and whose to say it may not be mine? Thirdly, we are super happy she is crawling because this will help her to build her upper body strength, overall body co-ordination and will hopefully balance out her left and right side (she seems to have a preference and more strength on her left side). 

So what's next for Lauren? Hopefully i'll be able to report before 6 months time, that she is walking. Again, it seems right now we are a long ways off (she is very imbalanced), but we will just take it one day at a time. 

So my next step is start working with Lauren in the area of communication, language and socialization. I'm going to talk to her doctor about this, but she is really far behind in this area, and progress has been non-existent to date. Overall she is a very quiet and content little girl. She babbled for a week, then stops, then picks it up again a few months later. Odd I know. Right now, she is not babbling. She was babbling earlier this month, but has stopped. We will figure it out. Again, one day at a time.

Tuesday, July 27, 2010

A video

No its not a video of Lauren, but a video about a dog. Get some tissues, its a tear-jerker. It serves as a reminder to me that Lauren will show us the way to what she is capable of doing and where she will go. She will continue to surprise us in her own way and will do amazing things in her life that we've never dreamed about or imagined she could do.

Wednesday, July 21, 2010

Moving forward for Cheerios

I have made the discovery tonight that Lauren is motivated by her cheerios. When I put them at a small distance, she is taking the plunge from sitting onto her belly, and then attempting to move FORWARD to get them, which is huge, since she would only before go backwards on her tummy before. She isn't crawling, just kind of slithering forward on her belly (sort of) - and to be quite honest, she only moved a few inches forward. Its a painful sight, because she is trying so hard to get the cheerios but is frustrated with her own lack of strength to get herself moving where she wants to go. She isn't very co-ordinated, but at least she is moving in the right direction and it finally looks like I have found something to motivate her to MOVE. I had tried every single toy and object in my house and she would just stare at them and reach, and if she couldn't reach for them from her sitting position, she would just simply give up. I think it will still be awhile, as I can see she still needs to work on building her tone and strength in her core and upper body, but hopefully this is the start to her getting mobile! 

My peanut's hearing and vision

An update on Lauren's hearing: We went took her for another hearing test at the hospital this week. She has a moderate hearing loss in both ears due to fluid build-up. It is a temporary loss, thank god. She will need get ear tubes put in when she goes for her palate surgery (which we still don't have a date yet), and then the hospital will do another hearing test after that. So all in all good news, and we hope with the ear tubes this will help with her speech.

The vision remains a puzzle. We had another visit this week from the vision consultant who is still puzzled with her vision. Lauren does see, as she is grabbing and attending to toys and objects of all colours, textures and sizes. She doesn't show any of the classic CVI symptoms, so right now, there isn't any vision exercises we can work on. So why did we get a test result of delayed cortical visual response time? What does this mean? Functionally, she seems right now to be ok. Her attention span isn't the best, but because she is behind in meeting her milestones, the vision consultant noted her attention span is developmentally appropriate for where she is at. She still has some issues with looking at people and her surroundings, but I guess we are just at a wait and see point. We have an appointment with the optho next week, so we look forward to hopefully getting some answers.

Other than that, not much is new with Lauren. She had her weight check with the doctor and she is about 15 and 1/2 pounds...little peanut. We'll see if she can beat her big sister Kayla at the 1 year mark (Kayla weighed 16lb 4 at 1 year). She is maneuvering around on her bottom 360 degrees, but still won't really go and take the plunge towards crawling. Once she knows a toys is out of her reach, she just pushes herself back into sitting from her tummy. Smart little cookie.

Steve's brother is getting married this weekend, so we are busy getting the house ready for some family who will be staying with us. Kayla is going to be a flower girl and she is excited about getting her hair done up and wearing a beautiful white puffy dress like a princess. I am trying to keep her free of bruises on her face this week - it actually is quite a challenge because she constantly runs around and bumps her head and face into everything! Kayla continues to enjoy her mini chef classes at the community centre and is just a delight to be around. She surprised me the other day by changing herself out of her pajamas and into her own clothes all by herself. She is becoming so independent and I am so proud of her. She is full of energy and is really excited about the wedding and seeing her Vancouver cousins! I look forward to the wedding...and having a drink (or two or three or four or five).

And a little update on myself, I got a new job! I decided to get back into healthcare, so I'll be working at a Toronto hospital as a project manager. So no more Lug...I will miss the people (and the perks of discounted bags), but I look forward to making a difference and improving the quality of patient's lives. I'm a little nervous about going back to work, and how all of Lauren's therapies are going to get co-ordinated, but I'm sure we'll figure something out...

Thursday, July 15, 2010

My new sorority sisters

After much contemplation, and on advice from my doctor (who probably thinks I'm a basket case), I met up with a small group of moms of special needs kids tonight. I have been on and off about the whole thing of meeting "others" - do I really want to know what its going to be like when Lauren is 4 or 5 years old? what if their kids are doing great and mine isn't? what if nobody understands? what if .... well no more what ifs. 3 hours later, I leave Timmy's with a list of therapists, daycares and other contact info for services for special kids. Who knew there were tax write-offs for therapies? And who knew there are people called respite workers who specialize in caring for children with delays? It was great gabbing with a bunch of ladies who "get it" because they are "in it"and live it every single day. We talk about the frustrations with the wait lists for everything, different learning techniques, our husbands (the good and the bad), and of course, our children. They have kids that didn't walk till 2, who are just learning to talk in 3 word sentences at 5, who are on gluten-free diets, who bite and hit their moms out of frustration or aggression. They understand immediately my worries, my fears, my tears. While all of their kids were older than Lauren (most were around the 4 year mark), I immediately recognized that everyone's situation is different, that every family is different, that every child is different and that everyone has a different way of dealing with "it". It was really nice to meet a lovely bunch of ladies and hear their stories. Its nice to know that we are not alone and that there are other families out there who have unique situations like ours.

A poem for my new sorority sisters ....this is us!

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters.

"Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars."

Monday, July 12, 2010

To accept or not accept?

My chromosomes may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
...To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

I found this poem on an internet board of moms with special needs kids. "That love is acceptance, It must come from the heart"....I try, I really do try, to accept what has come, what is coming, and what may come. Its been almost a year, and you'd think that after 11 months, I would have accepted everything for what it is, but unfortunately (and maybe humanly), I still have days where I find it very difficult to accept Lauren for who she is. I just want her to be better, in every single way possible. But I know that there are some things I won't be able to change. I think as long as I keep wanting this, it makes acceptance very difficult. I believe I will get day. 

Thursday, July 8, 2010

PT, OT, Vision, and a monkey jumping on the couch

So here's how things went this week for Lauren:

Lauren's physio therapist said we need to work on getting Lauren's core muscles (abdominal area) and lower trunk stronger and she needs to gain a better sense of balance. The next step for Lauren is crawling at this point, but her weak core muscles always cause her to collapse when she is on her hands and knees. I think it will be awhile before she gains this strength. I remember when she first sat. It took a few months for her to gain alot of strength to sit well independently. At first when she sat, she could only face forward. She couldn't even turn or rotate her trunk to look at anything on the side, otherwise if she did, she would topple over.It is only over the past few months that she is sitting more comfortably with balance and can confidently reach for things to the side without falling over.

We also saw her occupational therapist this week who pretty much had the same observations. Crawling is the next logical step. Also we should work on getting Lauren to pull up on furniture. Again, a strength and balance issue of the upper body. Crap, I feel like we are training her for the olympics..what comes so easily for most kids, she has to work so hard to just get there.Its frustrating and tests my patience every day...but I guess as long as she gets there in the end, who cares how long it takes her to crawl, walk, run? As long as she gets there....i'll keep my fingers crossed.

The worst part about therapies is they always send you home with "homework". Exercises to do when at home. And every time we have a PT or OT appointment, they always ask how the exercises are going.....kind of like when the dentist ask if you've been flossing. You debate for a minute whether to tell the truth, that you floss "kind of", some days not at all, and that the night before you go for the appointment you make sure you brush and floss like there is no tomorrow. Well its the same with the exercises. We always have the intention of "flossing" every day, maybe even twice a day, but some days we get lazy, and some days we think "what's the big deal if we skip a day", and some days are just so busy, we just don't have time. And then when the dentist announces you have a cavity and proceeds to pry your mouth open with clamps, you think "crap I should've flossed". After seeing my dentist and the PT and OT this week, my summer resolution to myself: I will floss and Lauren will do her exercises at least once per day. I don't know how many times I've made that promise to myself to floss every day, but now that its tied to Lauren, I think she will keep me to it.

The vision therapist was pleasantly surprised by Lauren when we saw her.She primarily observed Lauren playing with different toys that she brought and remarked that Lauren was seeing better than what she had expected (from the paper result). She says that Lauren does not exhibit all the common characteristics of CVI from what she observed (e.g. most kids with CVI would not be able to pick up a cheerio off a white background and Lauren is able to do this and Lauren does look at an object and grab it, whereas some kids with CVI will look at an object and then turn their head away from the object and then grab the object). Lauren does like to gaze at shiny objects, reflective surfaces, and especially at lights and fans and we find she has difficulties looking at people, faces and observing her surroundings and environment. The vision therapist will continue to do her observations/assessment every 2 weeks for the rest of the summer so we will keep everyone posted.

I took Lauren this week to a playgroup called Wiggles and Giggles. Thankfully there were only 2 other babies there, a 5 month old and a 9 month old. Lauren really enjoyed it. What a difference from a few months ago. I almost cried when Lauren started reaching up in the air to try and touch the bubbles from the bubble machine...she would have never done this a few months ago.I know its hard to believe, but a three months ago, she would have just sat there or lied on the floor and just stared blankly at the bubbles (and I would be wondering whether she notices them or not) and her hands would have been at her side just resting. Finally she is showing more interest!

So as you can see, its been a busy week and in between all this, we've been trying to keep Kayla busy. She was so bored, she even went with me to the dentist and hair dresser...anything to get out of the house I guess. Kayla, our monkey girl, took a huge fall yesterday off the back of our couch (because she was jumping up and down on it) and landed on her face against the kitchen floor. There was so much blood streaming out of her mouth, I honestly thought she had knocked a tooth out. Thankfully, it was just a deep cut on her lip. And what did she do today? She jumped off the back of the couch again...when will they learn?

Sunday, July 4, 2010

My weekend with the girls alone

Well I survived the weekend with the two girls alone. Steve was off in Montreal for his brother's stag leaving me behind with the two kiddies. Things went pretty well. Friday I took the girls to High Park and met up with a friend of mine and her two kids. I managed to survive 4 hours trekking throughout the park without a double stroller (thankfully Kayla is so small that she was able to squeeze into my friend's Chariot stroller (who says a double stroller can't hold 3 kids?!)). The kids had a great time: we went to the petting zoo, they played in the castle and splashed in the splash pad. Kayla soaked all her clothes at the splash pad and so she sat in the car buck naked with only a towel around her all the way home. What a little monkey! Saturday, Kayla had soccer and then we were at another friend's house for some more water fun in the backyard. Sunday, Kayla went swimming in the morning at a local pool, we made pancakes, eggs and bacon for breakfast with family, and then we watched Toy Story at home with a big bowl of popcorn. Now it is Sunday night and both girls have been sleeping since 8:45pm. I tired them out! Phew. The weekend is over.

It was nice to spend time with just the girls this weekend. Kayla is quite a character, her personality is really coming through, she makes me laugh all the time. She is an awesome big sister to Lauren and to her cousin Bree. She fed Lauren solids twice on the weekend (which allowed me to wash the dishes and get things cleaned up) - although she jabbed the spoon so far into Lauren's mouth that she almost gagged and threw up. She is picking out books for bedtime (2 story books for Lauren and 2 for herself), and she managed to squeeze toothpaste onto her toothbrush herself and brush her teeth herself without too much of a mess. This weekend Lauren had real chicken for the first time which she loved (she's only had baby food chicken before), she sat in a high chair for the first time (which I am super excited about, because the many times I tried before, she always seemed to slouch alot so I opted to put her in a booster seat instead), and she seems to enjoy sitting in the splash pool. Its funny, I spent a lot of time this weekend with a few kids who are very close in age to Lauren. I am surprised at myself, but I did not feel jealous or unhappy or resentful. I actually felt really happy, proud and appreciative of all the big (and small) things her little friends have accomplished, although Lauren seems like miles away from some of their achievements. Perhaps its a sign that I have comes to terms that I am in Holland. Although I do always think about Italy.

So what's up for this week? We have physiotherapy and a visit from the vision consultant this week. I am eager to see how both appointments go. I am also taking Lauren to a Wiggles and Giggles class for 4-12 month olds. I am a bit nervous obviously. I know she is behind and although I am not suppose to compare, sometimes you just can't help it. I hope I will be ok. I want to take her because I think she needs some outside stimulation. Being trapped all day in the house with me doing exercises and watching Kayla isn't that fun. I actually took Lauren to this same class when she was 6-7 months old, and I remember watching all the other babies of all ages reaching for things while mine did nothing with her arms, not even showing interest in lifting them up....I remember how scared I was and how envious I was of all the other babies. Now, at least I can go back and show that Lauren can reach too...a little late, but she reaches for what she wants!
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